Tuesday, 23 January 2018

The black hole...

I can’t organise myself. Fact. I don’t know why. Well I think I do, I never used to be like this, it just keeps getting worse. My consultant says that it is down to the fact that I have a stressful job, MS and a baby, he doesn’t seem to think that it’s necessarily getting worse. But it is.

I am so organised at work, I have to do lists that are very organised and concise. I don’t have them sprayed around on post it notes so that I am overwhelmed. In meetings I mark very clearly what actions I have to do and by when, but that’s where it ends.  I don’t know why, neurological reasons or not, but I just don’t do them, I don’t even look at my actions or to do list? Maybe I have a legion in a place that is my organisation system? I know that in some very unexplainable way, I just cannot remember directions, at all. Not even “down the corridor and second door on the right”! It took 3 weeks of sat nav to remember how to get to my new place of work. It was off the motorway, left at the first roundabout, straight over the second, left at the third and right at the fourth. Three weeks for that!?? My brain obviously has a place where it wants to store this information, but it can’t. Rather than finding another place to put this crucial information, it simply dumps it in what is now a black hole. Well this seems to be true with organisation and remembering to do tasks, remembering to remember to do the day to day. Unless it’s really routine, like brushing my teeth, I need a calendar reminder on my phone to remember to do it and that’s only any good if I remember to do it after I have seen the reminder!
This is a problem, a big problem with my job and I constantly battle this day to day, constantly wondering what I have forgotten, what I have done wrong, when will I get caught for not doing something I should have or said I would. It’s soul destroying and more tiring than I care to know. Always on edge when people talk to me and when they ask if I’ve do this or that. On Monday morning, I fear when people ask what I did at the weekend, I just don’t know. I often look a fool and I’ve found my way to get round that. Ive come up with stock answers that I can use and that generally gets me through without embarrassment, unless of course I am with someone that was with me on Saturday or Sunday! Why can I remember stock answers and not what I did? Is that a different part of my brain that isn’t affected? Can that really happen? Is this the MS? I don’t know, all I know is that I’ve seen my brain scan and it looks like a Swiss cheese, of scars and legions, from a picture in the 1800s in black and white!!

Either way, I can manage that, it’s just a job and people get over it. Whether they know I have MS or not, it makes no difference. If you have MS, you get it, if you don’t, you just think that it’s a bit odd but normal, but what they don’t feel is the hurt and embarrassment.

My biggest issue is when it encroaches on family. I have an amazing family, I love my little family with all my heart. My wife is incredible and so outwardly supportive of me. She gets me and gets what I’m going through. She’s done research into MS and does all that she can to understand and empathise.  The problem comes when my organisation affects my little 20 month old daughter.

I work long hours and don’t see her during the day. If I’m lucky, I see her before she goes to bed and I’m very lucky to have all day Saturday with her, it’s just amazing! But what really kicks me is that my missing organisation is beginning to encroach on family life. I can organise her just fine and if we go out, I generally have enough stuff that all is good, nappies, food, spare clothes etc. This is organised in a way that I know how to do and can remember and preschedule, just like brushing my teeth. The issue is bigger than that. I’m going to work tomorrow and I don’t know where my daughter is going to be! My wife juggles an extremely challenging occupation where by she tutors and does supply work at various schools, constantly juggling where she has to be, by when and most importantly what she needs. I do not envy that task. In fact, I don’t know. I don’t know any of these details about my daughter’s day, well, snippets at best unless I write it down. But do you know what gets me? All I have to do is ask. Ask my wife where my daughter will be tomorrow, what did we organise, what can I do to help, just to ask about her day. But I don’t. I don’t know why, but I don’t. It’s not because I don’t care, oh my god I really do. I just don’t. Maybe I do ask? Sometimes I get told on the 4th time of asking that I’ve already been told what the plan is for the morning before nursery, where she is going, who she will be with, but I just don’t remember. The saddest thing happened this evening and this is what prompted me to write this blog. My wife asked me to organise her lunch for the morning and get her ready before I went to work, a perfectly valid and normal request, after all, we are both working tomorrow. The sad part is that I couldn’t even say what she was doing tomorrow, I didn’t know where she was going to be and when. The worst thing, I didn’t even know what she ate for lunch. What?? How can I not know that? That’s routine right? Like brushing teeth? I should know that, I can do that! No, not the case.
Her lunch routine seems to be constantly developing. The amount, the content, the timing. It’s different depending on whether or not the food can be cooked or if it has to be cold in a lunch box. It’s a minefield of options. It’s scary. It’s ever changing. It’s fallen into one of the black holes, my brain just cannot store it. I wish could explain, but I can’t. It’s by far the most frustrating thing. I can fumble through my day and I learn to live with the feeling and thought “what have I forgotten to do today” what ball have I dropped”, but when it affects my family, that hurts.
The worst bit of all is that I don’t even remember to ask the important questions. Why dont I ask? Why dont I ask my wife what my daughter is doing for childcare tomorrow? Why don’t I ask what food she is now eating at lunch? Why don’t I know it without asking?? Why do I even have to remember to ask, I should do that anyway? Shouldn’t I? That’s normal, after all I used to remember. That is right isn’t it?
I wish I knew the answer to this, I wish I could explain it and understand. I often think to myself, if only I had a switch and if a pressed it, you would feel what I feel. Feel the worry that I feel minute by minute, that I have forgotten something, missed something, messed something up, just for 1 second and then you might get it. But I can’t and it’s not their battle to fight, it’s mine and do you know what, I’m winning!! I’m getting there!
I have a loving family, a beautiful and amazing wife and the most gorgeous and loving little girl. I really couldn’t ask for more. MS does not define me, I do. I have my issues, my battles, but I have my family, I have my experiences, I have my life and I love it and live as best I can given the circumstances. Yeah it’s tough, but it’s worth it. Turns out, Swiss cheese brain or not, I am a lucky man!

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